I think this is going to be long! My health update, rehab and thoughts about Mom’s SO broken hip’s treatment. Basically, two what-the-fucks and two mostly on the positive side!

*******Insomnia*******

I’ve been having a difficult start of the year. In early January everything was still normal (well, my normal – not good, but okay and I could deal with it for the most part). But the week starting with January 22, 2024 I’ve been feeling bad and uncomfortable so much! My sleep problems went back to insomnia – that week started with the 22nd, I slept only every other night. Then the night before Monday next and Tuesday, I didn’t sleep at all either night. And of course it was just when I supposed to partake in a TE-toimisto mandated short job seeker’s course – which meant I had to go get doctor’s/nurses notes for Tuesday and Wednesday, after somehow managing to get through Monday course day with restlessness, migraine and terrible exhaustion.

Since then I’ve been able to sleep some most nights, with maybe one night a week with no sleep at all. The nurse I saw that “I need a note for TE-toimisto” Tuesday, referred me to a sleep nurse specialist because I have been having sleep problems and outright insomnia for a decade. I also got a medication to help me fall asleep, that usually does seem to help but sometimes doesn’t work. I’m limited on the meds I can use because of the liver thing back in 2014. I’ve seen the sleep specialist nurse for three times now, and I’m working on changing my sleep patterns because they’re all wrong. Basically, I’ve been sleeping whenever I managed to get to sleep – whether that’s 11am in the morning or 8pm in the evening. I usually feel the best when I go to sleep between 8pm – 10pm and get up (after actually sleeping more or less the whole night) at 6am, and no later than 9am if I’m still too exhausted at 6am to stay up after taking my morning meds. Back before 2008, when I was healthy, I needed 9 hours of sleep to feel refreshed and for early mornings not be pure torture. So we’re aiming for that 9 hours now again. Apparently too much sleep is also bad, and cause tiredness. I’ve been feeling like 12 hours of sleep after becoming ill is needed for me to feel even somewhat rested.

For more than a decade, the problem has been that sleep doesn’t refresh me and both Crohn’s Disease and chronic migraine and their meds and other meds I have to take can also cause exhaustion. And migraine attack often stop me from sleeping at night, or force me to sleep during the day after it’s over because if I don’t, the chance of the migraine attack renewing later in the same day is more likely than not. Also the chronic diarrhea caused by Crohn’s Disease often stopped me from sleeping at night because I had to keep going to the toilet up to 10 times during the night sometimes. So keeping a regular sleeping pattern went out the window when my chronic migraine and Crohn’s Disease were at the worst about 2008-2016. I had to get whatever sleep I could, when I could. I wasn’t working when it all started, and if I had been, maybe it wouldn’t have gotten so bad because the doctors would’ve had to had work harder on controlling my symptoms because the employer would complain about my absences and sick leaves. Although I’m not sure it would have helped because the first time bowel inflammation showed up in biopsies was when my 4th colonoscopy was done, 4 years after the start of the chronic diarrhea, and I finally received the Crohn’s Disease diagnosis after 4 years. But anyway, the end result is that my sleep pattern is totally wrong, out of whack and that sleep hasn’t been refreshing me since about 2010.

I have no idea what causes my current insomnia problems. I do have stress, but it’s the same stress about health that I’ve been having since 2008 and health stress actually hadn’t been as bad as it used to be for a couple of years now because my symptoms have been better! There’s also the money stress, but I’ve been having that my whole adult life except for the bits I’ve had actual paying jobs. So most of my adult life I’ve been worried about money and making rent. One thing that is bad now is that Finland has a new far-right-wing government since last May and literally ALL of the plans are awful, as far as economics, education, civilization etc. etc. go. Their cuts will have huge effect on my finances and life starting January 1, 2025. But I’ve known about them since they first published the in the summer so why would insomnia suddenly now set in?? On the other hand, I do feel that as long as this far-right-wing government is in office, there is no hope for me personally, and that Finland is traveling backwards and completely in wrong directions on all possible fronts that have to do with economics, poverty, unemployment, disability, humanity, civilization and education. There is nothing positive in sight as far as the politics go, currently. Then there’s the KELA stress though, because this year KELA has fucked up both January and February in a very beginner way they shouldn’t make such errors (but the cutbacks that are required by our far-right-wing goverment and KELA banks on people not seeking rectification of errornous decisions!) and while January was rectified, I’m still waiting on the February decision, and if KELA fucks up March too, I won’t be able to buy any meds myself this month (I’m running out on several) and probably will have to ask my Mom to help me buy them while I take the matter up further the chain.

Anyway, I’ve started working on the sleep pattern (since Friday) the way the sleep nurse said: limit the time spent in bed, and only be in bed for sleep and sex. So I’m trying to limit my med time to 9pm – 6am, no matter how much or little I’ve slept. And to not sleep after 10am or take naps during the day/in the afternoon because those affect falling asleep at night. Naps during the day aren’t that much of a problem because once I started a B-vitamin supplement that has all the B-vitamins, assuming that I slept at least somewhat (like 4-5 hours) at night, I can stay up through the day without too much hardship. But when I didn’t sleep at all, or only maybe 3 hours, or just dozed but felt like I was conscious the whole time, that’s when it’s hard. Sometimes impossible. But I’m going to try to make a damn hard try until the next time I see the sleep nurse in two weeks. I only fear that the chronic diarrhea or chronic migraine will force me to keep up at night because those are things, especially the migraine, that I can control only so far.

********Weird attacks************

For a while now I’ve been having these weird bouts of feeling awful: usually with a migraine attack or an almost one (but not always), more flatulence than normal (normal for me is none or so little I don’t notice), freezing while feeling hot on the outside. I think these happen when my period is close (a week or less) to starting or the first day of it or so. Nexplanon was implanted in my arm last May, in hopes it would stop my periods entirely. It didn’t, but it reduced to them to mostly spotting. But then the last, I don’t know, 2-3 months? My period’s have been coming more often – currently it’s every two weeks. They last for 6-9 days usually currently. Usually very light bellyache. I still like these current periods better because of the spotting and the lesser bellyache – now I don’t feel sick during bleeding like always before. But now I get these bouts of weirdness as described. Every week or every other week. Usually seems to help taking diarrhea prevention med and the one that should reduce flatulence (not as effective as the discontined med I had for that purpose before). I’m usualy also restless – might space around my apartment, or move back and forth in my chair. If I’m in bed, I turn every minute. No position is good position.

And then the freezing while hot thing – what with that?? The thing that comes to my mind first is menopause; I’m that age that it could be! But also a lot of chronic migraineurs tell of cold chills and hot flashes. My freezing hot chills get so bad I shake, but putting my arms under the covers feels too hot and pushing my leg out from under the covers feels freezing cold! Such fun!

One bout lasts anything from 2-6 hours. I think I’m slowly learning how to treat them – the trick seems to be to take enough the anti-diarrhea med, but not too much to cause constipation… the amount of anti-diarrhea med need during periods seems to be a lot bigger than when I’m not having my period. I’m not sure whether this is because my Crohn’s Disease diarrhea and symptoms have actually lessened in the last couple of years (they have!), but the period then worsens them for a few days or a week, or is it all caused by migraine (stomach migraine?). I did notice before I got sick in 2008, that I had more bowel movements during my periods than at other times, so it could be just that. But the weird thing is that other than the usually worse-than-normal head pain during a bout, I have no pains. Flatulence and farts yes, stomach pain – nope. Always before, when Crohn’s Disease cause these sorts of things, there were either mild or bad stomach cramps.

I had one of these fit during that Monday of January 29th of job seeking course I mentioned above, and I got through it by pacing in front of my laptop and shaking. It was just awful. It got that worse soon after the start, so I didn’t think first anything that bad was coming in addition to the migraine I was having already. I got through the day somehow but wasn’t truly able to concentrate on the matter at hand, although it distracted me too. But I’m having these often enough, that they’d cause absences if I were working. These fits are fucking frustrating. I’m so out of patience feeling that awful so often.

I had one fit yesterday (Saturday) starting around 4pm, and then another starting on last night around 3am. I still don’t feel normal, but instead like it could start again. I’ve had a window open a lot today, to let in cold, fresh air because it seems to help.

This is again another time in a long line of health gets better -> some new symptom or illness pops up. So far this has happened every time my health has been stable, and in recent years, also better, for a while.

It’s looking threateningly like I’ll have to talk to my GP and my gastro doc about these fits if they keep interrupting my life so badly. Just to hopefully figure out whether its the conflation of all my major illnesses in one for a bit, or menopause, or stomach migraine or fucking what.

********Rehab******************

TE-toimisto (the unemployment office) suggested last year that if my long-time sick leave is denied (which it was), I’d apply for ammatillinen kuntoutusselvitys (AKSE) by KELA. This isn’t actual rehabilition, but an programme where a patient or someone with problems with functionality in regards to work and studying can apply to. It’s consists of max 10-11 days, involves a doctor, psychologist, physiotherapist and other professionals as needed to find out and evaluate a patient’s possibilities and limits on physical, mental etc. functionality. The aim is to find a way forward towards work or study, but I think also if disability is the right status. But this being KELA, work or study is the preferred option no matter what. I’m very curious about it, and hope they and me can find a way out/forward for me from this limbo I’m in. I’m not going to get any better, so what there is now, is what’s it’s there going to be and any work or studying will have to work at my current level.

It’s planned to take place in mid-April and I’m a little worried that my insomnia and those weird fits will ruin it. But I’m looking forward to it!

******Mom’s SO’s broken hip*****************

A little over a month ago my Mom’s SO slipped and fell outside their home ate in the evening, and broke his hip. He was in the hospital for about a week and was then released home, and since then we’ve been so impressed with how well the health care organization is taking care of him! Every week a physiotherapist comes to their home to put him and his legs through the exercises to help his injured leg to heal and strengthen, and apparently this is going to go on for months! And a nurse also comes once a week, to also put him through usually other leg exercises with the same aim. On their first visit, the physio and the nurses also charted their home conditions – such as what helping tools they need (toilet helpers etc.), or a ramp to get in or out, whether they need home help, etc etc. Nurses have also charted his/their eating habits, and strongly recommend that Mom’s SO should start drinking 1-2 bottles of nutrition shakes a day because he doesn’t eat fruits and also doesn’t get enough protein. He’s just very stubborn so it’s a work in progress with those shakes. The doctors are also doing all sorts of tests such Doppler ultrasound, X-rays, Alzheimer’s/memory tests because he has stomach problems, dizziness and showed signs of memory issues in a narrower memory test and at some point they’re also going to do something so he hopefully will get a better hearing device. They are really looking into all that now, and we are of course very glad! But Mom says she’s so stressed because she isn’t used to having so much going on. And the nurses etc. always call her to arrange appointments because he doesn’t hear properly. And she has to drive now all the time and he’s a terrible backseat driver. But at least she’s used to driving because of her hobbies.

I’m so glad he’s getting all this help, but a cynical part of me keeps thinking it only because the health org needs to make sure he can manage at home if at all possible. It’s well known that there is a terrible lack of assisted living and care for old people, and old people homes (for people who aren’t ill but can’t take care of their home anymore) don’t exist anymore. People are kept at home and then they fall/burn themselves/forget to eat because of weakness/dementia/Alzheimer’s and get brought to emergency and are returned home and fall/burn themselves/forget to eat because of weakness/dementia/Alzheimer’sagain and taken to emergency and then home again. So I keep thinking they doing all this work just make sure he can manage at home so that he won’t add pressure into the assisted living care. I’m sure the nurses and physios etc. do it all because they want to help him, not because politics of the politicians. But I keep thinking that’s the reason for the hightened attention.

Although, I hadn’t realized that a broken hip is so much worse than a planned hip replacement that both my Mom and he had had before. We are also sort of sour that when Mom’s hip was replaced, and then re-operated on because it kept displacing, she was kept in the hospital a day or two and then sent home. The first time she saw the physio was several weeks later, had to go there herself and saw the only 3-4 times over several months. Basically, she was left on her on to make the exercises and to mend. Now as we are seeing how her SO’s mending is, it’s so much more effective with more attention and care.